Welcome - Porphyria Community

What is Porphyria ?

The porphyrias are a group of eight, relatively rare, genetic disorders. In each porphyria a specific enzyme, which is needed to complete each step on the pathway to produce haem, is faulty. With all porphyrias this results in a build-up of porphyrins. They have two possible effects: acute attacks or skin sensitivity in sunlight.

http://www.epvantage.com/Universal/View.as... article underscores the key contribution EPP patient representatives have had in the approval of Scenesse by the EMA - They have had a pioneering role and paved the way for a new approval pathway actively...